We would generally say to use the same sun protection techniques that you would use for any of your children.

Primarily, we advise sun avoidance in the very hot parts of the day- 10am to 4pm April to September in the UK. It will be different for different countries.

In the UK we don’t get a lot of hot weather, however the UV can be high, for those times of the day we say to avoid being out if you can, if you’re out avoid the sun by sitting in the shade. The shade does not prevent you from getting UV, but it decreases it, so sitting under a tree or under a parasol and walking on the shady side of the street are really good ways to minimise sun exposure.

The second thing is protective clothes which massively reduce your sun exposure.

  • a big hat which goes across the ears, back of the neck and over the face is probably the best thing you will ever do for any of your children when they’re small,
  • longer sleeve T shirts instead of strappy T shirts to cover the shoulders,
  • longer legged shorts
  • UV suits- if you’re definitely going to be out in the sun, or going on holiday then UV suits which cover those areas are really worth while.

Last of all, sun cream! We recommend 30 – 50 or 50 plus SPF for babies. After that, 30 plus SPF on the areas that are exposed.

If you have to be out in the sun and you’ve worn suitable clothes but your face is still showing… then put sun cream on your face or the tops of your feet. Anywhere on your body which faces upwards.

This advice is the same for all children, in the UK you can get some protective sun cream on prescription from your GPS.

This answer has been taken from a Q&A zoom session with Professor Veronica Kinsler, recorded in April 2020.
Please note this is an accurate answer at the time of recording. However, due to the continuing advancement in CMN research, it is important to seek current guidance and advice from a medical professional or by contacting Caring Matters Now. You can watch the full recorded session here.

Sun protection

Children and adults with CMN can and should enjoy a normal life. They should have very good sun protection but the same as would be recommend for all children and adults. As a general rule sun avoidance, coupled with good clothing protection, are more important than suncream.

Sun avoidance

Children should be kept out of direct sun as much as possible during the hottest hours of the day in the hottest months of the year, for example in the shade. The hottest hours of the day are 10am-4pm, inclusive, and the hottest months of the year are April to October, inclusive. Outside these times there is usually no need for sun protection in the UK.

Good clothing protection

Sun hats with a brim that covers ears and the back of the neck as well as the face are ideal, as are longer sleeved tops and longer shorts/skirt.

Suncream is not a substitute for sun avoidance and good clothing protection. It should, however, be used as extra protection if the child has to be in direct sun during hot periods for areas that are not protected by clothes. The best sunscreens contain a reflectant barrier such as titanium dioxide; select a high protection factor (SPF), ideally 30 or more (or 50 or more for babies), and with high UVA protection (5 stars, usually on the back of the bottle).  Sunscreen needs to be refreshed every 2 hours or so, more often when swimming or sweating.

Other important points to remember:

  • UV exposure is much higher when beside water or snow, so special care should be taken when swimming outside or skiing.
  • The sun is more harmful at higher altitudes.
  • The sun remains almost as harmful when it is cloudy, so even if the day is cloudy the child should wear appropriate clothing such as a sunhat during the hottest times of the year.
  • Shade provides less protection when near water or snow or when the weather is cloudy.
  • The increased risk of skin cancer in children with CMN probably applies to their whole body, not just on their CMN.

Yes, you can request sun cream on prescription. However, here are a few things to consider as you do:

  • Some GPs are restricted as to what products they can prescribe, this does tend to change per post code,
  • The ability to prescribe products is dependent on whether they can issue a EPS Token which is a barcode you can take to any pharmacy for an item.
  • GPs are restricted on the brand and volume that they can prescribe, some of our members have requested SunSense or an alternative such as Uvistat.
  • There are varying amounts of suncream prescribed per month to our members, some reporting 4 bottles per month, others 1 bottle, others have been unsuccessful and unable to receive any on prescription.

Please do search our closed Facebook page to read some posts from other members about accessing suncream on prescription.
We also have a letter available upon request which you can forward to your GP or dermatologist if necessary, email support@caringmattersnow.co.uk.

As a charity we work closely with the British Association of Dermatologists (BAD) alongside other patient support groups, quite often the conversation comes up about products which GPs can prescribe per condition, consistency in suncream provision, on prescription, is something we will continue to advocate for on behalf of our members.

To find out more about the support we offer through our team of Support Contacts and Regional Contacts, click here.

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